02:08AM, Friday 21 December 2012
A little girl who suffers from a severe form of epilepsy has had a special sensory room built to help her battle with her condition.
Neve Dandy, four, of Lovel Road, Winkfield, suffers from a childhood form of epilepsy called Dravet Syndrome, that sees her have 30-50 seizures a day.
The room was funded through a £2,750 grant from the Make-A-Wish Foundation and £15,000 raised from fundraising challenges undertaken by friends, groups, and father Graham.
The dedicated room at the family's semi-detached home includes learning aids, sensory equipment and tools to help her development and supplement her care.
Father-of-two Graham said: "The first day Neve saw it she went crazy and there was lots of arm-flapping and running around in circles. It gives her independence and her life is much better with the room."
He said support from people has been 'amazing'.
It has taken the pressure off him to raise funds and leaves him free to spend more time at home. The 38-year-old said it has been a better year for Neve as they have weaned her off a strong drug with horrible side affects, while a ketogenic diet has helped her.
He said: "Neve still has 30 seizures a day, which can trigger at any time, but she has not been in hospital all year. She cannot get in a bath for more than 30 seconds and she cannot do normal things."
Graham said he and wife Rebecca hope to send Neve to primary school in April as she is now being tutored at home.
He said: "She is strong academically being autistic, but cannot do things other children can do, so we will look to send her part-time and still have home tutoring."
Dravet Syndrome is a rare form of epilepsy, and affects one in 40,000 and causes severe seizures that can strike any time and can last up to an hour and a half.
The family are continuing to raise cash to supplement her care and pay for setting up and paying for physiotherapy and speech and language therapy programmes, and cranial osteopathy.
Visit www.stayclosetoneve.com for more details.
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